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Sick, tired and frustrated

Hi everyone,

I'm a 22 year old male and I began feeling ill in October with malaise and overwhelming anxiety and depression, this progressed to awful joint and muscle pains, fatigue and the butterfly rash on my face. I have seen several doctors who've ran tests ANA, ENA, FBC, CK, etc etc and the only abnormalities that have returned is a borderline low C4 and a low lymphocyte count 1.3 (I'm aware these fit with the alternate criteria) I've started experiencing a lot of strange symptoms with stinging pains, tingling, cold pains (feels like a drop of waters fallen on me) and it seems to be peripheral neuropathy, couple this with my anxiety and depression which came from nowhere and I'm pretty convinced I have CNS involvement or NPSLE. I have had a skin biopsy done of the facial rash and I'm awaiting the results on Thursday. At the moment I'm bedbound feeling so weak and nauseous 24:7. I'm aware that bloods can take a while to change and this is so frustrating for me id rather just know either way although it seems fairly obvious lupus is my ailment. I'm struggling to come to grips with this and going from an active, happy, cheerful young guy to this in a few months is making me so depressed. Reading about how serious this is and knowing that I'm likely to suffer more serious complications makes me feel like I can't carry on

hi, and welcome.you are not alone with this.I am also a male with lupus.with todays medical treatments, some people live a normal life with no unusual problems.unfortunately also some people do not.most of us live somewhere in between ..... lupus is not the death sentence that it was some 30 years ago.most sufferers go on to live a full life cycle.many of us can still be involved in sport and work activities.not everyone is so lucky, some people do still die from complications of lupus.this is a sad fact.but keeping up our medication regime, and working with health professionals does increase our life expectancy, back to normal.there is also support groups designed around younger people.we have a teens section within our site, or there are others.I know this is hard to comprehend .....but lupus is here to stay,it does not have to be the end of life as you know it, be prepared to listen to your body, and work with it.I have had lupus for about 35 years, and I know friends who have had it longer than that.

The Following User Says Thank You to steve.b For This Useful Post:

Thanks for the reply and advice. I'm really struggling at the moment and constantly feeling ill and tired is sending me into a deep depression, I have sought psychiatric help as this illness has already made me want to end my life and it's just beginning. How did your lupus begin and progress over time? I feel cursed

once you start to understand more ...... the desperation lessens.please remember you only have 1 shot at this life, and it is never worth taking it .you have so much more to do with your life .... it may be difficult at the moment, but most of us manage to get to a new normal, where we can function effectively.I have had health issues for over 35 years ..... I was only diagnosed about 4 years ago.I spent years with doctors unable to work out what was happening to me.once they knew, medication started, and my body slowly responded.only then did it start to get easier. I am not cured, and will never be.but life is worth living, please always remember that.

You can do this, we all do. I've been dealing with Lupus for almost fifty years. You have bad times and good times. Right now you're in a bad time, it will get better. You need to give yourself a chance to adjust. I can remember one doctor smiling and saying at least it's not cancer. (Little attempt at humor there). Can you possibly imagine that even after all this time I too get frustrated, wishing this wasn't true. But facts are fact, let them find the right meds for you and you will feel better, physically, mentally and emotionally. Lupus hits different people different ways, we are all individuals. We react in different ways so it's hard to compare one case to another.

You best bet is to research lupus, reading the threads on this site to gather information on the experiences of others. Above all, take a deep breathe, think about your special happy place (that's what I do) and relax.

Never give up on life, especially if you have lupus. I have had it for forty years or more. Take it day by day. Get all the support you can. You can learn to live with this. All of us on this site have.